More about Neurotin

Discussion in 'Fibromyalgia Main Forum' started by Redbud, Mar 7, 2003.

  1. Redbud

    Redbud New Member

    I need to know more about the uses of this medication. I know it's clinical description and uses. I am finding that doctors are using this for many elusive pain disorders. I have neurontin but have not started taking it regular yet. I started with 300mg. 3x day and could not function. I must be able to work, chase kids, clean, cook, do finances and think straight. I'm afraid this med will not let me. Of course I say the pain keeps me from doing all these things too, because my mind just can't concentrate on much else but the misery. I think I'll just take it once a day at night and see if that works.
    Don't ask me what my diagnosis is because the drs. can't make up their minds. To sum it up in my opinion, I have 'unilateral atypical facial neuralgia' to the best of my own research. I've had encephlomeningitis as a child and viral meningitis as a young adult and also have occasional bouts of facial shingles and terrible deep ear pain with no signs of infection. Drs. tried the TMJ route but that is not the cause. Now I'm having feeling of difficultly swallowing and a terrible tightness in my throat that won't give up. I keep trying to find out what it is, the doc just scratches his head. However he did do MRI of the head, neck and c-spine with and w/o contrast and found nothing but large lymph nodes from my right tonsil down the right side of my neck. I think all this is viral induced, because it does'nt get really bad until in the fall when the cold and flu season starts. First round of anything I get, these symptoms intensify and continue thru the season
    I just want some releif without the totally stoned feeling so I can remain active as possible. Please tell me some of your experiences with Neurontin and with any similar symptoms.
  2. jesfms

    jesfms New Member

    i tried neurontin thinking it might help pain esp. in jaw but i could never get past the dizziness...just couldn't function...went through just about everything for jaw pain...finally dr put me on activan at bedtime...wake up refeshed and no jaw pain...before it i was afraid to call to sleep cause i would wake with severe face/head pain
  3. Achy-shaky

    Achy-shaky New Member

    You can not start out taking 300 mg 2x day!! No wonder you are dizzy. I just don't get why doctors don't explain this - I was lucky mine is very cautious with me because of many adverse reactions so he had me start at just 300 at bedtime and 100 once in day to get system used to it, then increased slowly. The first time I took 200 in daytime I was a bit woozie but I took it easy & in few days was able to withstand it and then could increase to 200 2x day which is finally getting to that nerve pain that's been killing me for months now. Nothing else works for it and if you want to try it again just ask doctor for the 100 mg capsules for daytime use instead of the 300's.

    Hope that helps...blessings to you for a painfree day!
  4. Shirl

    Shirl New Member

    Hi Redbud, welcome to the board. Sorry I have no imput with Neurotin, I have Fibro and only take supplements, am allergic to most meds.

    I sure hope you find out what works for you, and what it is that is causing all your pain.

    What has helped me the most is Magnesium, most of us that have FM/CFS are deficient in this mineral. It does take time to work, its not a quick fix when you take supplements, they take time to get in your system.

    Let us know how you are doing, and again welcome to the board.

    Shalom, Shirl
  5. Sandyz

    Sandyz New Member

    Welcome to the board. I too recently started taking neurotin. I am taking 300mg. I started just taking one a day at bedtime for a whole week. Now, finally I`m starting taking two a day. My doctor too, wanted me to take way to much starting out. The first 2 days I was very tired. but I quickly got used to it. Its working pretty well for me helping with my pain and so far I`m not having any side effects. I think it will help me quite a bit.

    Start out slow if you need too, and once your body get used to it, you probably won`t feel so tired.

    Good luck with it and take care.
    [This Message was Edited on 03/07/2003]
    [This Message was Edited on 03/07/2003]
  6. Annie06

    Annie06 New Member

    I too have tried Neurotin, and yes you do have to start VERY SLOW. The first few wks. I was VERY TIRED!!! all I did was sleep!! Now I am used to it, and it does help my pain somewhat (Ihave DD) I now take 400mg x3 a day. I still sometimes have the dizziness. But so far it seems to be the only med, that has helped my chronic pain.

    Annie06
  7. shannonrn

    shannonrn New Member

    I have been on neurotin for 5 years. Currently I take 800 mg at night but I have taken up to 3200 mg throughout the day. All I can say is that you will get used to it. It took 2-3 weeks before the extreme fatigue to resolve. Hang in there because I believe there is great benefits from taking it.
  8. amilyne

    amilyne New Member

    hi redbud..and welcome..well peeps im beginning to believe that i ahve a high tolerance to meds because i just started neurontin last week taking 300 mg three times a day and i have not had any of those side effects, no dizziness, no tiredness nothing..but im not sure its doing anything yet to help me or not...well i wish you luck and am i weird??
    -ami
  9. Redbud

    Redbud New Member

    I appreciate all your replys. I agree that the dosage needs to be lower starting out during the day.
    I saw the dr. today and he thinks he has the diagnosis pin pointed as glossopharyngeal neuralgia. I am convinced. He found the trigger point inside my throat behind my enlarged tonsil. However, the pain and symptoms extend beyond the scope of function of that one nerve and must involve other cranial nerves. I am being referred to a neurologist who specializes in this area of cranial nerves. This current dr. says a mild bout of shingles I had on my face back in Dec. could be the culprit for this round of intensifying pain. I've had it on and off since 94, but never like this. But I've always said that I felt it was viral induced. Always comes on me during the cold season when the cold bugs are going around.
    I am a biotech student and have done some study on viruses. They're wicked little creatures that do come back to haunt us. Especially the Shingles or Varicella Zoster virus.
    I joked the other day about being afraid the ENT dr. would want to take out my tonsils (since that is where the pain seems to orginate from) and laughed, saying I'd rather have brain surgery. I'm not laughing now. The research I've done on this problem says that the meds like neurotin and such do not work very well and that surgical disection of the nerve is sometime warranted. This particular cranial nerve is the smallest and deepest set one of all. And says that most of the time there is other nerve involvement. The surgical risks may be greater that I would want to risk anyway. Also the literature notes that most patients become very depressed and some sucidal! Why does that not surprise me?
    I can only imagine how the fox with his foot hung in a trap must feel when he is chewing his own leg off!!!!
    I just have to get on the meds and stay on it for awhile and see if the nerve calms down. Thanks again everyone for your posts! I wish you all the best in your situations and appreciate you sharing!